primitives on being disabled

[franksolich]

http://www.democraticunderground.com/10022600785

Oh my.

Akoto (3,479 posts)    Mon Apr 1, 2013, 09:12 PM

On Being Disabled

I don't know why I felt compelled to do this, but I'd like to repost a reply I wrote to someone a few nights ago concerning people "scamming" the disability system. As I've frequently mentioned, I am disabled myself with an incurable pain condition. The day after tomorrow, I have to make the all-day trip to the University of Miami for a pain management visit, a trip which always strikes terror into my heart due to the distance. Perhaps that's why it's on my mind. Perhaps it's also because, as my condition gradually but surely worsens, one of the items on my bucket list is to advocate for the disabled before a large audience. I wish I could do it before a government panel, in fact, but the nearest congressman in Florida who might support it is Alan Grayson - not in my district, so I don't know how to contact him directly.
 
So, here it is. Read it through, think it over, perhaps learn something you didn't know. The disabled live a Hell most people can't imagine, and that's understandable, because the human mind wasn't made to process the things our bodies are dealing with. Still, trying to understand goes a long way, much more so than pity.
 
-----

It took me over two years plus a really good lawyer and University-level doctors to get approved. That was on my third try, when I went before the Administrative Law Judge (who actually had to look me in the eye as I told my story instead of rubber stamping a denial).
 
You can't just walk into the local SS office and get SSI/SSDI. It is a grueling, excruciatingly complex and delayed process for anyone who does not have the most severely obvious disabilities, such as paraplegia or something like that. I had a double whammy in that I am only 28. My disability first began to present at 17, went chronic in my mid twenties. I also have a disability which is rare and little known, an 'invisible' illness only very well educated doctors can see the signs of. I'll get back to that latter point in a bit, because it's important.
 
My first two applications were denied almost as a matter of course. On the second time around, even though I was going to a University-level specialist, they had me see a SS doctor. A homeopath who really had no clue what my condition was or how deeply the pain and pharmacy of medications impact my life. In the end, I was required to go before a judge on the third try, which is where most people have their best shot. Remember, this wasn't weeks or months. This was years of persistence, of languishing in my illness as the bureaucracy sought ways of denying me.
 
I was fortunate. When I went before the judge, my evidence and the credentials of my doctors overwhelmed the fact that I had a rare, invisible condition. The ruling was fully favorable. However, in order to get there, I had to stand before a conference table of strangers and relate every minute detail of my condition. My pain is pelvic in nature, and I mean everything pelvic, so you can imagine how humiliating that experience was.
 
As I became ill when I was young, I didn't have the work credits for SSDI, so I had to take SSI. I'm grateful because Medicaid came with it and pays for my many medications. Otherwise, I get $710/mo. That is the cap. I receive the cap because I have an agreement with SS that I'll pay my parents what's called Fair Share, or an equation based upon total expenses of the household. In my case, that's $370/mo. So, right there, you have my funds reduced to $340/mo. Ironically, I was keeping more money without paying fair share, but at least this helps my folks.
 
You must then consider the expenses that small amount of remaining disability funding has to go toward. Dental care, for example, is not covered unless you want to go to county health to get your tooth yanked. I have to maintain a very expensive diet consisting of various dried fruits and whole wheat in order to keep my gut moving, due to all of the pills. Then, you have clothes. You have gas bills to get to the doctor. So many things. If you're very lucky, you might manage to scrimp away a little each month and eventually buy something for yourself, like a book or a video game. Something to keep you sane while you're housebound.
 
Oh, and then there's the reviews. The medical reviews to prove that, yeah, your body's still torturing you. The financial reviews where they intrusively examine your expenses to see if you've ever violated the rules. I keep a book which notes everything I pay for. Every. Single. Receipt.
 
Now, about the invisible illness thing. The term refers to people who have disabling illnesses not readily apparent to the naked eye. When we think of the disabled, we think of people who are mangled or whose bodies are obviously not functional in some way. People don't tend to consider that someone may have a neuropathy, a degenerative spinal condition, a hip issue, or any other number of things. In my case, I have Chronic Pelvic Pain Syndrome with Pelvic Floor Myofascial Dysfunction. If you were to look at me, I'd seem as healthy as can be, yet I'm in constant pain. I walk with a cane so that I can catch myself when the neuropathic shocks come. I lay down and stand because I'm unable to sit. I dread going to the bathroom because the pain in the aftermath means having to sit in the tub for some relief.
 
Don't judge the disabled. No matter how they look to you (and we do get very good at hiding our illnesses - most of us don't want the attention or pity), they may be living a Hell you can't begin to imagine.

Why is it that no disabled primitive ever has a normal disability?

Why is it always some rare exotic thing?

duffyduff (717 posts)    Mon Apr 1, 2013, 09:22 PM

2. My brother just got SSI

I took us almost two years, but the ALJ approved him for it because his psychological issues impaired his ability to ever be able to hold down a regular job.
 
It really depends on the judge you get. It's a crapshoot. The lawyer we had said some judges will approve as many as 85 percent of their cases, while others approve as few as 15 percent.
 
The doctor's report is all important.

Akoto (3,479 posts)    Mon Apr 1, 2013, 09:24 PM

4. Very true. It is extremely important to stay on top of the doctor/records.

We made certain to get a copy of every single record from every visit, and when the doctor said I was disabled, we made certain that he noted that opinion in his records henceforth. I think it probably made the biggest difference, that and my physical therapist's explanation of my condition and what we go through.

duffyduff (717 posts)    Mon Apr 1, 2013, 09:34 PM

7. There isn't anything that can be done about my brother because his anxiety and personality disorders won't get better, and it was noted by the psychologist who examined him. He's about 55 years old, and the chances are zilch he's going to change.
 
I don't like being the representative payee, however. My brother can pretty much handle his own finances. We just need to keep the receipts and stuff and file them.

I'm sorry, but as someone who knows truly disabled people who deserve help--but either don't get it, or refuse to take it--franksolich's heart isn't going to bleed for a primitive.

M0rpheus (334 posts)    Mon Apr 1, 2013, 09:31 PM

5. This might help you contact Alan Grayson, since he posts here.

http://www.democraticunderground.com/?com=profile&uid=259058

^^^

[Big Dog]

DUmmy Akoto

I have Chronic Pelvic Pain Syndrome with Pelvic Floor Myofascial Dysfunction.

Two complaints which can't be confirmed by any lab test, MRI, CT scan, X-ray, biopsy, or nerve conduction study. They can't be found, and they can't be cured.

Our tax dollars at work, citizens.

[Chris_]

M0rpheus (334 posts)    Mon Apr 1, 2013, 09:31 PM

5. This might help you contact Alan Grayson, since he posts here.

[Freeper]

thucythucy (1,150 posts)
10. Thank you so much for posting this.

People with disabilities are a favorite target for the right wingers wanting to cut "waste," and even some progressives have this ridiculous notion that disability is some sort of gravy train, that people with disabilities have it "easy." Far from the case. All the people with disabilities I know have to deal with, not only their own particular disabling condition or illness, but also with the absurd, Kafkaesque social safety net--which is inadequate at best--and people who do not or will not understand that they are going through.

I wish you all the best in coping with the deck life has dealt you. And I admire your eloquence--and your courage--in posting here.

Best wishes to you and yours,

Thucy

PS: Have you ever seen the film "When Billy Broke His Head?" by Billy Golfus? It does a great job explaining what a messed up system we have for providing necessary supports to people in your position. Also "Lives Worth Living" which was on PBS about a year or so ago. Finally, there's a new book out, "What We Have Done: An Oral History of the Disability Rights Movement." You might be able to get one or all of those at your public library.

Best of luck. Thucy

I have never said a single word about those who are truly disabled, it's you moochers who can post on DU all day long, but claim you can't work that bother me.

[Vagabond]

S/He/It could work.  There's a lot it could do that don't depend on sitting.  There are even desks that can be adjusted to be comfortable for use while standing that she could use.  If bedbound, a workstation could be configured to work around that.  There are a lot of activities that this primitive could concievably do, but I guess the pull of the monthly tugboat is just a little too much.

[diesel driver]

duffyduff (717 posts)    Mon Apr 1, 2013, 09:22 PM

2. My brother just got SSI

I took us almost two years, but the ALJ approved him for it because his psychological issues impaired his ability to ever be able to hold down a regular job.

It's called "Liberalism".

It took my wife over 2 years and 3 tries to get on disability, for chronic pain from injuries received from her years as a medic and an abusive first husband.

First try, SS LOST her application!

Since then, she's had 2 back surgeries (facing a third one) and a hip replacement (doctor that did the hip said she was the youngest woman patient he's operated on.)

[ChuckJ]

Notable cases

John Anderson — Deputy Prime Minister of Australia
James Boswell — author of Life of Samuel Johnson
John Cleese — British actor
Vincent Gallo — movie director
Glenn Gould — pianist
John F Kennedy — President of the United States of America
Howard Stern — radio personality
William Styron — author (Sophie's Choice)

[Gina]

I dread going to the bathroom because the pain in the aftermath means having to sit in the tub for some relief.

TMI! 

[Karin]

I didn't read it, so I was blissfully unaware of that, Gina.  Till you posted it. 

Alan Grayson posts here!  He can help!!!   

[Carl]

I didn't read it, so I was blissfully unaware of that, Gina.  Till you posted it. 

Alan Grayson posts here!  He can help!!!   

For a small 25.00 donation that is.

[marv]

A nation suckered, bilking billions from the government...

(snip)

The jobless recovery may equal misery for millions of Americans, but it’s created a boom in Social Security disability claims, many of them no doubt sheer gold-bricking via “personality disorders” and other imaginary illnesses.

Nearly 18 million people — one in 20 Americans — are collecting some $170 billion a year in disability payments, a record high, and the government estimates that fraud and other improper payments account for $25 billion of disability spending over a recent four-year period.

(snip)

Like the “barefoot beggar,” who only needs to take his shoes off to get free stuff, Dependency Nation has learned how easy it is to take the government for a ride. In many cases, it’s simply a matter of correctly — if fraudulently — filling out the right forms and sending them in.

Unseen by human eyes, claims are processed by computer and checks go flying out in return; Medicare alone handles some 1.2 billion such claims annually.

(snip)

Altruism and panhandling...

(snip)

The problem of homelessness is well known, and it is not primarily caused by poverty. Some of the homeless are alcoholics and drug addicts, and many are mentally ill, set adrift by reforms that made it harder for the state to involuntarily commit them to mental institutions. A few of the homeless, in my experience, are simply so averse to the responsibility of a job, a house, and paying the bills that they would rather live in squalor than plan more than a few hours ahead, and they find that big cities are wealthy enough that they can live on the crumbs.

(snip)

But the system goes much deeper than this. It goes to the very question of why everyone bought the story in the first place. Why did no one—from the young greenhorn to the mainstream media reporters to the other New Yorkers who admitted to giving Hillman shoes in the past—why didn't they ask more questions sooner?

The reason is that this was never the point. They were not focused on the person to whom they were giving their largesse. They did not inquire seriously about the cause of his plight or the requirements of his wellbeing. He was simply there to be the object of their charity, to help them make a show—to others and to themselves—of being enlightened and compassionate.

This is the contradiction at the heart of the philosophy of altruism, a contradiction captured in a quote attributed to W.H. Auden (though he didn't originate it). He described "the conceit...of the social worker—'We are all here on earth to help others; what on earth the others are here for, I don't know.'"

It's a joke, but one with a serious point, one Auden himself didn't fully grasp. As a moral philosophy, altruism means more than just kindness or benevolence. It is the doctrine that the moral purpose of life is to sacrifice oneself to serve others, that "we are here on this earth to help others." But by its nature, it asserts a purpose for human life that not all humans can fulfill. The "others" we are supposed to serve have, by this logic, no moral purpose. And so, in practice, they are treated as if they are not really human.

(snip)

...calling Ayn Rand...

[Big Dog]

...calling Ayn Rand...

I'll take rational self-interest any day of the week.

[vesta111]

I'll take rational self-interest any day of the week.

Don't know why there is any problem getting SSDI in this country. 

I called SS when my BIL received a pace maker.  45 years of hard manual labor and his heart went out.   He could not go into a training problem due to illnesses as an 8 year old that caused such high fevers it burned out parts of his brain,   he could not read or write.   

It took about 2 calls from SS and a huge package of forms for him to fill out and mail back and in two months he received his first check.      Come to find out his parents could have gotten him on disability as a child had he not been a other wise very healthy person, don't need to read or write to dig ditches.

We never had to go down town to the federal building, all was done by the mail and phone.

BTW I found out from the phone calls from SS that if I waited a year or so after becoming eligible that if I filed for benefits at the end of the year I would receive in lump sum a payment for the intire year I did not file.

All kinds of interesting stuff we seldom know about.   If you are within a year or two of retiring, stash as much money as you can to live on for a year, then make your claim in October or Nov. and you will get 9-10 months back payment and the checks start coming in every month in Feb.

Reminds me of the old Navy recruiting ads on TV in the late 50's------Join the navy at 18, when you retire you will be only 38.    Worked for a generation of folks that had the GI bill for free college, started businesses and  used the skills they were taught in the service to rebuild America after the war.   Oh yes rebuild, no more rationing of food or goods, Cars were being built for the public. 

How did family's get on at the end of the Civil War when the men came home minus an arm or leg. some were crazy as a Loon, some how these men found a way to feed their family.    Most who lost a limb never lost their dignity, they provide for themselves and family.

What are the Libs doing to today's men that fill our streets with the homeless except to give them every excuse to become eunuchs.